- The death of a baby before, during or shortly after birth is a major bereavement with lifelong consequences for the whole family
- The gestation that the pregnancy has reached does not predict the depth or length of the grief that parents experience
- Good care cannot reduce their grief but poor or inadequate care can and does make things worse both in the short and the longer term
The death of a baby before, during or shortly after birth is a major bereavement which can have lifelong consequences for the whole family. The stage the pregnancy had reached is not a predictor of the length or depth of the parents’ grief.1 Mothers and fathers grieve not only for their baby but also for lost hopes and dreams for the future. Many experience a loss of confidence, self-esteem and feel isolated from parents who have healthy babies and from those who keep their distance because they don’t know what to say or do.
Parents who lose one or more babies from a multiple birth have the additional difficulty of grieving for the baby who died and at the same time as bonding with the surviving baby who may be premature, critically ill or otherwise vulnerable. Parents who have agreed a termination for fetal abnormality have the added grief of having had to make this agonising decision.
The experience of grief
Grief is unpredictable. The feelings people experience, such as shock, anger, disbelief, sobbing and crying, do not come in any particular order. Instead they come in waves which at first seem almost continuous. There may be respites of calm when the bereaved can function almost normally, before other waves crashes over them.2 Along with the emotional turmoil, physical symptoms such as nausea, breathlessness, a feeling of weight on their chest, diarrhoea, eating and sleep disturbance are also common. While the feelings that people experience are universal, culture and religion often influence whether and how these feelings are expressed.3
Fathers’ experience of grief is similar to that of mothers, but many put their own feelings on hold and concentrate on supporting their partner and any children they may already have. The fact that they may not exhibit any signs of grief does not mean that they do not need care, understanding and support. Their grief may surface unexpectedly, sometimes weeks or months later.
The death of a baby affects every aspect of the couple’s relationship. Because grief is unpredictable, and because individuals deal with grief in their own unique way, couples are unlikely to experience the same feelings at the same time. This can lead to misunderstandings and friction. Their sexual relationship is also likely to be affected, not just because the mother has all the usual postnatal symptoms such as soreness and lack of libido, but because sex may have become synonymous with getting pregnant and the death of their baby. These difficulties mean that some parents find discussions about contraception inappropriate. However this is an important topic and it may be best to raise the subject tentatively, so that parents know at least where they can access contraceptive advice when they feel ready.
A baby’s death can also have a profound affect on siblings of all ages. Older children may feel that they have to care for their parents and may not be able to deal with their own feelings. Children who are too young to understand are likely to react to their parents’ sadness and preoccupation by regressing and becoming more clingy. This is hard for grieving parents to cope with: they may need extra help and support, and reassurance that this is common.
Offering care and support
The care that parents receive cannot reduce their pain and distress, but poor care can and does make things worse. Memories of poor and inadequate care tend to last a lifetime and continue to play on parents’ minds well into old age. However parents whose care was good never forget the people who were supportive, kind and showed that they cared.4
Listening, showing you care and giving them time are the most important things you can do for bereaved patents. Many bereaved parents need to tell their story over and over again, so being a good and empathic listener may be all that is needed.
There are no ‘right’ things to say, but there are some that can make things worse, so choosing words carefully is important. Many parents whose baby was born dead before 24 weeks of pregnancy find the phrase ‘late miscarriage’ upsetting and feel that it underestimates and belittles their loss. The vast majority prefer the word baby and are likely to be distressed if their baby is referred to as a fetus. Bereaved parents appreciate it when people use their baby’s name if one has been given.
Efforts to offer words of comfort or reassurance can sometimes misfire. Phrases such as ‘it was probably for the best’, or ‘you are young and can always try again’, should be avoided. Unless you have had a baby who died, don’t say ‘I know how you feel’. The death of a baby may strengthen a parent’s religious belief or may lead to a temporary or permanent loss of faith. Even if you share the parents’ faith, avoid saying anything religious such as ‘It was God’s will’ or ‘The baby is with God now.’
Many bereaved parents find it easiest to talk to others who have been through similar experiences. Sands has a network of support groups and trained befrienders in the UK who can be contacted via the Helpline.
When a baby dies there are decisions to take. These include whether to see, hold and name their baby, whether to have a post mortem examination, and what sort of funeral to have. When everything else has spun out of control, it is important that parents are helped and supported to make their own informed decisions. The decisions they make at this critical time need to be ones that they can live with for the rest of their lives.
However, it is extremely difficult to think clearly, to listen and to remember what other people say when one is shocked and grief stricken. So it is essential to offer information and choices one at a time, in the appropriate order, and to give parents the time to make up their minds.
Leaving hospital with empty arms, and returning to a home where they may have made preparations for their new baby, can be devastating. This is the time when many parents say that their grief really hits them. Good ongoing support from community staff, including GPs, practice nurses as well as community midwives and health visitors, can help parents through this difficult time and reduce their feelings of isolation.
Family and friends may offer to clear away any baby clothes and equipment in an effort to protect the parents from the distress of seeing them. However, most parents would prefer to do this themselves, as and when they feel up to it. This may be weeks or months after the baby has died.
For some parents another pregnancy is not an option but, if it is, deciding to try again can be difficult. Couples do not always agree; one may be keen to try again while the other is reluctant to face the uncertainty and anxiety that another pregnancy inevitably brings. Any future pregnancy is bound to be stressful and no amount of reassurance can allay parents’ fears. Extra check ups and scans can help but, until they have their new baby safely in their arms, they are unlikely to be able to relax. Even then, the birth of the new baby can re-awaken memories of the baby who died. So parents need extra care and support during and after any subsequent pregnancy.
The grief that bereaved parents experience lasts longer and is more profound than most people expect. It affects the whole family, including siblings and those that are born after their baby brother or sister died. In time, most families reach what many have called a new normal. However, each baby is unique and another child or children can never replace the baby who died. Parents never forget their baby and significant dates such as anniversaries of the baby’s due date or death, family gatherings, festivals, mothers’ and fathers’ days may trigger a resurgence
Offering good care and ongoing support after a miscarriage, stillbirth or neonatal death can make a huge difference to families. The time this takes is an investment in the future health and wellbeing of the whole family.
Sands exists to support anyone affected by the death of a baby. Health care staff as well as bereaved families are welcome to call our Helpline for information and support. For further information and resources for health care staff and for parents, please go to www.uk-sands.org
1. Peppers L and Knapp R (1980) ‘Maternal reactions to involuntary fetal/infant death’ Psychiatry 43:155–159.
2. Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Studies 1999;23(6):
3. Cowles KV. Cultural perspectives on grief: an expanded concept analysis. Journal of Advanced Nursing 1996;23:287–294.
4. Schott J, Henley A. Pregnancy loss and the death of a baby: guidelines for professionals. 2007;19-34.
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